Tuesday, May 1, 2012

An Update on Our Baby Girl: Clubfoot

Two editions, depending on how much time you have:The short story: We found out our baby will be born with a unilateral, isolated clubfoot (meaning, it's just one foot, and nothing else is wrong that could be related).The long story: It's kind of amazing how much your heart can ache for someone you haven't even met yet.When we went in for our regular 20 week anatomy scan, it was actually at week 22, due to some scheduling conflicts. It was no big deal, since we already knew we were having a girl. At that ultrasound, Baby was facing my spine, making it difficult to get some of the required measurements. The tech said she couldn't get the legs or the face, and I remember thinking - Well, the face matters, but the legs? I'm sure they're fine!So we rescheduled for another ultrasound the next week. Then their office flooded. I rescheduled again, this time at 25 weeks. I drank a big glass of orange juice hoping she would cooperate this time. I went alone because Tony was working (he's been amazing this whole pregnancy - and has come to every single appointment).The tech got to work, and it was so cute - our girl was folded completely in half (babies are so flexible!) and was playing with her toes, which were above her head. We just watched for a few minutes as she grasped and released her toes over and over again. I think she was enjoying herself. Practicing her fine motor skills at least.Because of her playing, it took forever for the tech to get the pictures/measurements of her legs. I kept thinking - who cares? it's just a leg! all of the other important parts are accounted for...I go back to the exam room to wait for the doctor to go over the measurements. Fortuitously, by this point, Tony has managed to get there and comes in just as the doctor does. I am so so so glad he was there - I don't think I could have handled having to retell him what the doctor soon told us.She said all of the organs looked great, face/palate looked great (that's the one I had worried about), but...But.... not what you want to hear from your OB. She pulled out one of the ultrasound pics - one of the cute ones of our girl playing with her feet. She showed us the picture and said she believed our daughter has a clubfoot, as evidenced by the unnatural angle of how her foot meets her leg bone. In the picture, you could see that her foot looked like a hand, as the toes on a clubfoot are usually more fanned out and curve inwards. Tony and I were both kind of in shock.But the worst was when she told us that sometimes clubfoot can be just an isolated birth defect, but other times, it's linked with certain chromosomal disorders (spina biffida, downs syndrome, and a whole host of other ones). Since this was not her area of specialty, she said she had already set up a meeting with a perinatal doctor in Atlanta for early the next morning, so we wouldn't have to wait too long to see what was going on. We were still in shock, I was trying to just focus my eyes on the doctor's name on the referral paper so I wouldn't start bawling right there. For some reason I decided it was my mission not to cry there. Tony tried to ask a few questions, but our doctor kept saying it would be best to wait and talk to the perinatal doctor because they know more about this than she does.She left the room and I couldn't even look at Tony because I knew I would break down. It didn't matter though, and the doctor came back to me sobbing and despite her kind words there wasn't much she could do to make it less terrible.We got back to the car and didn't really know what to say. It sounds vain, but I don't mean it to be so, but I couldn't stop thinking about how it was impossible that our girl would be anything but perfect. Other people have issues. This kind of thing happens to other people. How could our daughter be anything but perfect?? My heart was aching.I know Tony was so upset too, but I just couldn't even talk about it. So many what-ifs crossed our minds and the lack of knowing was the worst. It seemed like our 9am appointment was an eternity away. Despite the possibilities, I couldn't help but think that it couldn't be worse than just the foot. The foot I could deal with, that's just physical, just a foot - but the other possibilities were more than I could handle. But I just couldn't believe it was more than the foot - surely they would have noticed some other indication - a heart issue, another bone not measuring right. I was slightly comforted by the fact that I had had a few ultrasounds by then and nothing else seemed amiss at all.Perhaps it was good, but I had to get back to my student teaching class. I also had my own class that night that I couldn't miss. I had to pull it together to appear relatively normal until about 8 that night. Basically I didn't want sixth graders asking questions. Luckily my schedule made it impossible for me to Google anything - something I know would have been a slippery slope. Poor Tony had to go home alone and spend the evening thinking about it. He did some responsible Googling and sent me a few links about clubfoot. I just kept thinking - as long as it's only that, I can handle it.The night was miserable. I'll leave it at that. We got to the hospital in Atlanta nice and early the next morning, stomachs both churning. We waited forever but finally got in and the ultrasound started up. It's one of those deals where the tech does her thing and takes all of the measurements and pictures but doesn't tell you anything. She did it for over 30 minutes, printing out probably 50 pictures. We sat, glued to the monitor, trying to over-analyze anything we might see. She probably spent a good 10 minutes looking at just the heart. That was more than a little nerve wracking. Once she was done, we waited for the doctor to come in and I tried to not have a panic attack. I tried to not cry but the tears spilled out anyway. The doctor came in and repeated the ultrasound herself, saying nothing. She was nice but brusque and we just wanted her to say something. Finally (finally!) she said that she did see a clubfoot (baby's right) and asked what we knew about it. We basically just said we wanted to know if it was anything else. She immediately said that no, everything else looked completely healthy - all organs working perfectly and no indications whatsoever of a greater issue. We were so relieved.She told us a little about clubfoot, its treatment (it's totally treatable!), and gave us a referral for the doctors who would treat it once she is born.It seems crazy, but at that point, a clubfoot sounded like such a blessing. A foot! A foot is fixable. The swing of my emotions from the day before to then was huge. I didn't even cry any more that day, I was just so happy she was going to be fine, more or less.Don't get me wrong - I've certainly cried since then. Especially after learning more about the treatments and reading stories from parents who have had to deal with it. It will be tough. So very tough. But I think about all of the stories I've heard or read where parents have been through so much worse with their child and I am once again reminded to count my blessings - it's just a foot. A fixable foot.So I'm no expert on clubfoot. I've Googled a lot, but it's difficult to know exactly what to expect, since we will just have to wait and see how severe the foot is once she is born. But here's what I know.

This is where we will be taking her and they have a pretty readable summary if you want to know more about clubfoot.

Over 50% of those born with clubfoot have it in both of their feet, so we are lucky it's just one!

Her right foot will turn in towards her other foot and will sit up like she's walking on the outside of her foot. The toes will probably be splayed too (as we saw in the ultrasound).

They aren't sure what causes it - either genetics or environment - but it's actually pretty common in terms of birth defects - 1 in 1000. And once we told people about it, it seemed like everyone knew someone who was born with it - all of whom are perfectly normal adults now.

The recurrence rate for our future babies is low - like 2%.

Here's how the treatment works (from what I have gathered so far) - It's a lot like the process of getting braces on your teeth, really...

When our girl is about a week old (ugh) we will take her in for her first appointment - they will manually stretch her foot and put it in a little tiny cast - well, a big one relatively, since it will go from her foot all the way to her hip. But it will be tiny because she will be so tiny.

Each week, she will go for a new cast, since she will be growing so quickly. This will be done for about 8 weeks or so, depending on how her foot reacts. By the first week you can already see a difference. (Some random online pictures of this here)

Once she's done with the casting, the foot is technically "fixed," but it can move back

So she will have these little plastic boots she will wear that are connected to each other by a metal bar (keeping her feet about shoulder-width apart, feet at a certain angle). She will wear this contraption for 23 hours a day, for 3 straight months. (Some random online pics of that here)

After that, she will wear the bar only while sleeping, for the next few years of her life, until she's about four. The boots and bar act like a retainer might for your teeth after braces.

In some cases, they have to do what's called a tenotomy, where they actually cut the Achilles's tendon, because sometimes it's not long enough to function properly. It grows back to its correct length. This is usually done back at the casting stage.

Apparently the treatment is pretty painless for the kids - perhaps just a little frustrating. Most say it's worse for the parents.

So yes, it's fixable. And when you read the medical sites for treatment, it sounds pretty easy. Yet it's been great (and depressing) to read some blogs that are out there that tell the stories of real parents dealing with this. This one is my favorite so far. There are a lot of practical realities involved too that the doctors don't mention... The babies get blisters under their casts, the casts hurt or frustrate them, parents have to watch casts being cut off tiny legs, poop gets on the cast (ha!), the baby has to learn to kick the legs together when wearing the bar, big kids learn how to take the boots off and bedtime becomes a disaster when the boots have to go on, strangers will ask how we let a two week old break her leg.... Pants and shoes won't be an option until at least six months old, no footed pajamas, our crib will be destroyed by the banging of the metal bar. Possibly some sheetrock too. We will have weekly doctor appointments.

That stuff is hard to read. But then I know it will be tough but so worth it. She should be able to walk at a totally normal time with no trouble. By the time she's in Kindergarten, you would never know she ever had an issue. Plenty of professional athletes went through this same thing. By the time she's six months old or so she will only be wearing the brace at night.

We hope to meet with the orthopedic specialists before she is born so we can have a better idea of what to expect. I will update once we do that.

So there's my long rambling story about our baby girl. It was a rough week and it's still hard to grasp the fact that our baby will need medical treatment so early on in life. I can't help but feel a little guilty, like I did something wrong, even though I know that's pointless.

All of that stuff above sounds like whiny parenting problems. But really, what I want most, is for our girl to never hurt, to never suffer, especially not in the first few weeks of her life. But I know that's the impossibly hopeless wish of all parents...

So our girl will have a special foot. There have been tears. But we are also counting our blessings.

13 comments:

Oh Claire! I'm so sorry you have to go through this. You are right though, it will be worth it!

On a side note, I was acquainted with a couple who had a baby shortly after we moved to our current town. Their little girl had a club foot (just one), and started treatment a week after birth. About 15 months later, you never would have known - she was running around with all her little toddler friends.

You are not one tiny bit whiny! I'd have been crying my eyeballs out, too! I think you're handling this with grace, and I'm glad you're putting your story out there! Your little girl is so lucky to have parents that already have a plan for her tiny feet, and plenty of research under their belts. You look AMAZING and glowey. I can't wait to see that tiny bundle of cuteness!!!

Claire, my heart goes out to you and I think your attitude is amazing - those tears are therapeutic, cry them :). I'm sorry that this is something that you, Tony and baby girl will have to go through, and you're in my thoughts and prayers. (T had sugery at a 2 months for a birth defect - totally different defect, but I vividly remember that mama's heartache you describe, and you're in my thoughts).

Wow! What a roller coaster ride this week. You have the most amazing attitude about this and I'm really thinking about you through this. It definitely sounds like this will be harder on you as the parents. Lots of love coming to you from Illinois.

Hi Claire, I have been reading your blog for a long time but never comment. I think this stinks that this happened to your sweet little baby girl and I am truly sorry for you but I have to say that it completely breaks my heart to hear you say your baby wont be “perfect” Who determines what makes your baby perfect? Your baby will be perfect because she is yours. She was perfectly designed for you. Everything about her was handcrafted and specially created for you. I really pray that one day you do see her as perfect because it would really be sad to have her read this someday and for her to think she wasn’t perfect in the eyes of her parents. Im sure you didn’t really mean it to sound that way but it just really stood out to me when I read it and wanted to bring it to your attention. Best wishes.

Claire -- you and Tony and baby are in my prayers. Dealing with unexpected news always takes a little time to process and you are doing it so well by letting us all on here know what is going on. Your babe is so blessed to have you two as parents.

P.S. Don't worry about people -- your opinion is the one that matters and your thoughts come from your heart. Judging hurts, and you know that which will help you prep for the judging that you'll undoubtedly get when you are a parent... Keep smiling! :)

I am so sorry. I read your whole post and felt the swings of emotions- what a stressful experience.

I just wanted to give you more hope- I was a clubfoot baby. I had the casts on both my feet as a kid. I went to lots of PT, my parents stretched my feet out every night and I had special shoes.

But you know what? I turned out just fine. I can walk, run and do just about anything I want. (Albeit my feet still turn in more than most and I often rub my shoes off on the inside) Plus, I can swim; having feet that turn in a bit is great for swimming. You get more of a circular pattern going with the water and move forward faster! So maybe you have a swimmer on your hands. = )

I just wanted to comment and say that I think you have a great attitude- I am glad you are so prepared mentally. I am sure it will be a challenge- but you will do wonderfully. Hugs.

Reading your reaction to the news got me all teared up; I'm 27 weeks pregnant and our little girl has both club feet. At my 22 weeks ultrasound, we got the news from the tech, then the doctor confirmed it. It didn't seem like a big deal; the doctor told us it's pretty easy to fix. Then she told us we'd have to go to genetics, just to make sure there was nothing more to it; 2 weeks later we got our appointment. It was really emotional since we had to have more tests done (another ultrasound, blood samples from the father and I, and also an amniocentesis, which is pretty scary by itself). The week after we got a cardiac ultrasound. Everything turned out great, and last week we (along with 5 other couples) got an appointment with the doctor who will make the casts and follow the baby's progress. I couldn't believe how emotional I was, and how the other moms to be didn't seem to be! It helps me a lot to read about every little thing I'll have to think about (no pajamas with feet, no pants, what baby carrier to look for...), and to read other parent's journey through all this; it seems it helps me face the facts without over analyzing what we'll have to go through emotionally. As our doctor said: I have to put all this in the back of my head, look forward to the delivery, have a nice first few days with the baby, and then we'll proceed with the treatment. I'm actually glad I know beforehand what we're getting into, and as you said, some parents have to go through a lot worse, and without being prepared before the baby's birth. I know I wrote a pretty long comment, but I really wanted to thank you for sharing your story; I'm sure it helps a lot of people out there; it sure does help me anyway!

Hi Amelie!! Thanks for your comment (long is good!). I'm sorry to hear you have to deal with the clubfoot too, but I'm glad you're armed with info and have a good perspective on it all! and i've said this in many of my other clubfoot posts (go read those under "clubfoot files" tab if you haven't already!) but each family has a unique experience with it, i understand that - but honestly for us, it hasn't been bad - AT ALL! it's been just a hiccup and a minor inconvenience so far. i was so sad about it when we first found out, but then i just decided it wasn't a big deal and was pretty positive about it all. i think that helped a lot to not over-worry or stress about it. i cried a bit when she first got her cast on and then the brace, but honestly, it's gone so fast and it's not really even a big part of our life anymore (harper's 10 months). hopefully you will have a similar positive experience! keep me posted on your baby! :) best wishes!